Special Needs Populations
Americans with Disabilities Act, p. 698
burden of chronic disease, p. 701
Children with Special Health Care Needs (CSHCN), p. 700
chronic disease, p. 700
disability, p. 698
developmental disability, p. 700
dual diagnosis, p. 700
functional limitations, p. 700
Medical Model of Disability, p. 698
Social Model of Disability, p. 698
work disability, p. 699
Lynn Wasserbauer, PhD, FNP, RN
Lynn Wasserbauer is a nurse practitioner at The University of Rochester Medical Center. Her current practice is in psychiatric nursing. Her bachelor’s and master’s degrees in nursing are from the University of Rochester. Her PhD in nursing and her post-master’s certificate as a family nurse practitioner are from the University of Virginia.
Special thanks to Susan Kennel, PhD, RN, CPNP and Carol Lynn Maxwell-Thompson, MSN, RN, FNP-C, who authored this chapter in the seventh edition of the text.
Foundational to the American system of government is the belief that all citizens are entitled to protection of individual civil rights. Unfortunately, individuals with disabilities were among the last groups in the United States to receive civil rights protection. Until the late twentieth century, widespread discrimination against the disabled made it difficult for them to feel fully integrated into society. As a result of this discrimination, the disabled often were literally shut in and shut out of much of American society. The Americans with Disabilities Act (ADA) of 1990 was the first comprehensive civil rights legislation for individuals with disabilities. One effect of this legislation is a greater emphasis on community care for the disabled, rather than institutionalization, and there is a growing emphasis on providing that care in as “home-like” an environment as possible.
One of the many challenges for the disabled is access to appropriate health care. Although not all care can be delivered at home, public health nurses are uniquely positioned to serve as care providers and managers for community-dwelling disabled individuals. Having an understanding of disabilities, disability rights, and the legislation specifically enacted to decrease discrimination will assist nurses in intervening and advocating for the disabled.
This chapter provides an overview of disabilities, defines key terms, and reviews the effects of disabilities on individuals, families and communities. Also, relationships between disabling conditions and Healthy People 2020 are discussed, as is the nurse’s role in planning and providing or securing appropriate interventions for individuals, families, and communities to deal with or prevent these health problems.
Models of Disability
There is no single accepted definition for disability. The definition of disability varies depending on common use of the word or the specific agency defining the term. With regard to health care, the Medical Model of Disability is generally used to understand the disabled. In this model, disability is considered to be a function of physical characteristics or conditions that place an individual at a disadvantage compared with those lacking the characteristic or condition. This model places emphasis on the disabled person and the need to modify the course of illness, or as much as possible to give the disabled person a “normal” life. This model is used for determination of disability by the Social Security Administration. In the Social Model of Disability, emphasis is placed on systemic barriers as well as societal attitudes and stigmas that contribute to the perception that those with limitations or physical illnesses are disabled. In this model the focus is on the need to change society and not the individual with a disability. This model has led to a focus on civil rights for the disabled and the need for legislation addressing discrimination (Scullion, 2010).
Disability is defined by Webster’s as “the condition of being disabled; inability to pursue an occupation because of a physical or mental impairment; a program providing support to one affected by a disability; lack of legal qualification to do something or a disqualification, restriction, or disadvantage” (Merriam-Webster, 2010).
Census Determination of Disability
In the U.S. Census of 2000, the population was assessed to determine and define disability based on functional limitations. The census bureau collected data on the number of individuals with disabilities. Six specific subpopulations of disability were identified and include employment disability, sensory disability, mental disability, physical disability, self-care disability, and go-outside-the-home disability (U.S. Census Bureau, 2009b).
For the 2010 census the definition of disability was changed to improve the response rate and gather more reliable
information. The current definition of disability includes the following: no question is asked about employment disability, hearing difficulty/vision difficulty, cognitive difficulty, ambulatory difficulty, self-care difficulty, and independent living difficulty. These changes may appear subtle; however, they represent a conceptual change away from a strict medical model of disability (U.S. Census Bureau, 2009b). Box 31-1 lists the top ten causes of disability in the United States.
Work disability, as defined by the U.S. Census Bureau, refers to a person who meets one or more of the following conditions (U.S. Census Bureau, 2009a):
Social Security Disability
The Social Security Administration, who ultimately determines the individual’s status for disability benefits, defines disability as “the inability to engage in any substantial gainful activity (SGA) by reason of any medically determinable physical or mental impairment(s), which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months” (USSSA, 2008, p 1).
The Social Security Administration states that an impairment “results from anatomical, physiological, or psychological abnormalities which can be shown by medically acceptable clinical and laboratory diagnostic techniques” (USSSA, 2008, p 1). The Social Security Administration and Workman’s Compensation Systems determine the patient’s disability based on clinical evidence. The health care provider should consult the office of Disability Determination Services in the Social Security Administration or the Workman’s Compensation Department for guidelines from individual states since requirements may vary.
Americans with Disabilities Act
According to the ADA, the term disability means, with respect to an individual, (a) a physical or mental impairment that substantially limits one or more of the major life activities of such an individual, (b) a record of such an impairment, or (c) being regarded as having such an impairment (ADA, 1990, Section 3 ).
Thus, individuals who are clearly diagnosed with an illness that limits functioning in one or more major life activities are covered. According to ADA guidelines, hearing, seeing, speaking, walking, caring for oneself, or thinking are examples of major life activities. An individual must have significant difficulty independently performing one or more of these activities to meet the definition of disability.
Also covered by the ADA are individuals who have a history of an illness, those who have been considered (possibly erroneously) to have had an illness, or those who have been treated as if they had a disabling illness. The intent of the ADA is to reduce “discrimination based not only on simple prejudice, but also on stereotypical attitudes and ignorance about individuals with disabilities” (Jones, 1991, p 34). This means that individuals may have been misdiagnosed or inappropriately treated as if they had an illness or disability. Because of this, these individuals may not have had the same opportunities available to them as did non-disabled individuals. An example of this is intelligence testing or assessment of cognitive ability. If there was an underestimate of intelligence or functioning, an individual may not have been allowed full access in education. This then may have limited his or her ability to be prepared for higher education.
The International Classification of Impairments, Disabilities and Handicaps from 1980 were most recently redefined by the World Health Organization (WHO) in 2001. This new classification, called the International Classification of Functioning, Disability and Health (ICF), provides standardized language for measuring, classifying, and defining disability. The new definition of disability considers not only medical problems, but also physical, social, attitudinal, and personal factors (WHO, 2010b). In the new classification, functioning and disability are determined by the complex interaction between the health condition of the individual and environmental and personal factors. It recognizes that external factors beyond body structures and functions contribute to the disability. The emphasis is on function rather than the condition or the disease. It is relevant across cultures, age groups, and genders and is a useful way to measure health outcomes (CDC, 2010b).
Functional limitations occur when individuals experience difficulty performing basic activities of daily living because of their disability. Examples of functional limitations include difficulty standing, walking, climbing, grasping, and reading. Emphasis is placed on the level of function rather than on the purpose of the activity, so that functional limitation can be associated with the disability. For example, impairment in the strength or range of motion of the arm could lead to functional limitations in grasping or reaching. Affected individuals may have difficulty performing basic self-care activities such as bathing and dressing.
In psychiatry the phrase dual diagnosis generally means a substance abuse disorder concurrent with a mental illness disorder (Horsfall et al, 2009). For children with developmental disabilities, dual diagnosis usually means that a mental illness disorder is present simultaneously with mental retardation. It is also possible for nurses to care for clients who have dual diagnoses involving physical limitations.
The term Children with Special Health Care Needs (CSHCN) is defined by the Maternal and Child Health Bureau of the USDHHS Administration as “those who have or are at increased risk for a chronic, physical, developmental, behavioral or emotional condition and who also require health and related service of a type or amount beyond that required by children generally” (Maternal and Child Health Bureau, 2008). This definition is broad and includes children with many conditions and risk factors. The prevalence of special health care needs increases with age and varies with race and ethnicity. The children with the highest prevalence of special health care needs are Native American/Alaska Native children, multiracial children, and non-Hispanic white children. The lowest rates are in Hispanic children and non-Hispanic Asian children (Maternal and Child Health Bureau, 2008).
The term developmental disability, as defined by the National Center on Birth Defects and Developmental Disabilities of the Centers for Disease Control and Prevention (CDC), is a chronic impairment that occurs during development and up to age 22 and lasts throughout the person’s lifetime. The disability limits the functioning of an individual in at least three of the following areas: self-help, language, learning, mobility, self-direction, independent living, and economic self-sufficiency (CDC, 2010c).
Chronic disease, or illness, refers to any long-lasting condition or illness. Disease processes (e.g., diabetes mellitus, cancer, heart disease) and congenital or acquired conditions (e.g., Down syndrome, severe burns, amputation of a limb) are examples of chronic diseases. Therefore, concepts related to disabilities and functional limitations may apply to individuals with a chronic disease or other conditions. For nurses working with these clients, the onset, course, outcome, and degree of limitation are important factors to consider when determining the meaning of the disease to individuals and the families.
Persons with disabilities have often been defined by their illness or disability. Defining someone by their disease or disability is devaluing and disrespectful. It can also place artificial limitations on an individual’s potential and value. Language is powerful. The word handicapped symbolized the person with a disability begging with a “cap in his hand.” The term disabled is often used to describe cars that are disabled, indicating they are broken, not functioning, or defective. Whereas we may refer to things that are broken or defective, people with disabilities are not broken. Rather than saying a baby has a birth defect, a better term would be to say a child has a congenital disability. The Person First Movement was initiated in an effort to promote acceptable language for people with disabilities. The Person First Movement advocates for political correctness in defining persons with disabilities. In other words, refer to a “woman who is blind” rather than a “blind woman” or a “person with diabetes” rather than a “diabetic” (Snow, 2010).
Definitions of disability need to take into account the degree of disability, the limitations it imposes, and the degree of dependence that occurs as a result of the disability. These definitions can range from minor to severe. Situational factors also affect the disability experience and influence the individual’s ability to cope and function in society. Nurses and the interdisciplinary team need to be included, informed, and involved in the science of disability and rehabilitation to be influential in the decision making related to practice, policy, training, research, and funding.
Scope of the Problem
Number of Disabled Americans
The American Community Survey (ACS) conducted by the U.S. Census Bureau is a yearly supplement to the Decennial Census. The ACS collects information on demographic, social, economic, and housing characteristics, as well as disability data. According to the most recent ACS data collected in 2008, approximately 12.1%, or 36 million, of non-institutionalized men, women, and children in the United States reported a disability. Prevalence rates by type of disability are as follows: vision 2.3%; hearing 3.5%; ambulating 6.9%; cognitive 4.8%; self-care 2.6%, and independent living 5.5% (Erickson, Lee, and von Schrader, 2010).
However, when the total U.S. population, including institutionalized individuals, is considered, the total number of individuals reporting a disability increases to 19%, or 54.4 million U.S. residents. That is, about one in five U.S. residents reports having a disability. Among those with a disability, approximately 12%, or 35 million residents, report having a serious disability. Approximately 28.9% of families, or about two in every seven families, reported a family member with a disability (U.S. Census Bureau, 2008).
Number of Disabled Worldwide
According to the WHO, approximately 650 million people have some type of disability. This number is increasing annually in part because of the increase in chronic diseases, injuries, automobile crashes, violence, and an aging population. Of the disabled, 80% are poor and live in developing countries. Worldwide, most of the people with disabilities have limited access to basic public health services and rehabilitation (WHO, 2010a).
Data obtained from the Global Burden of Disease Study (WHO, 2008) indicated an increased prevalence of severe disability and dependency in Africa, the Middle East, Asia, and Latin America. Conversely, the former socialist economies of Europe have seen a decline in the numbers of disabled individuals who are dependent on others.
Burden of Chronic Disease
Another way to consider disability data is to look at the burden of chronic disease. Although not all individuals with chronic diseases are disabled, the following data from the CDC provide convincing evidence that chronic diseases contribute significantly to the development of disability. Chronic diseases such as heart disease, stroke, cancer, diabetes, and arthritis are some of the most common, costly, and preventable of all health problems in the United States. Approximately 7 out of 10 deaths among Americans each year are from chronic diseases. Heart disease, cancer, and stroke account for more than 50% of all deaths each year. In 2005 nearly 50% of the adult population, or almost 133 million Americans, had at least one chronic illness (CDC, 2010a).
Disabilities among the chronically ill are common and the CDC reports that about one fourth of people with chronic conditions have one or more daily activity limitations. For example, arthritis is the most common cause of disability, with nearly 19 million Americans reporting activity limitations. Diabetes continues to be the leading cause of kidney failure, non-traumatic lower-extremity amputations, and blindness among adults ages 20 to 74 (CDC, 2009).
The WHO (2008) collected data on the Global Burden of Disease, and within this study, disability is defined as loss of health. They conceptualize heath as the ability or inability to function in areas such as hearing, vision, mobility, and cognition. The most recent data available are from 2004, and the three leading causes of disability worldwide are hearing loss, vision problems, and mental disorders.
Additional Causes of Disability
Several other conditions and inherited problems can cause disability (Figure 31-1). These include genetic disorders, acute and chronic illnesses, violence, tobacco use, lack of access to health care, as well as failure to eat correctly, exercise regularly, or manage stress effectively. In addition, substance abuse, environmental problems, and unsanitary living conditions can cause disability. The people reporting these causes identified difficulty with functional limitations, difficulty with activities of daily living (ADLs)/instrumental activities of daily living (IADLs), or inability to do housework, or to work at a job or business (CDC, 2009).
Older adults, especially the frail elderly, often develop disabilities resulting from illnesses or injuries. When these disabilities are associated with hospital admission, there is an increased fall risk (Sherrington et al, 2009). Falls in the elderly frequently result in injury which then leads to additional disability from loss of independence and mobility (Clough-Gorr et al, 2008). This loss of independence places additional burdens on family members and caregivers to provide assistance with ADLs and IADLs.
An estimated 13.9% of children in the United States have special needs, which may be developmental, behavioral, or emotional in nature. Moreover, 21.8% of households with children have at least one child with a special health need. Children with special health care needs require such things as prescription medication (86%), specialty medical care (52%), vision care (33%), mental health care (25%), specialized therapies (23%) and medical equipment (11%). Although most of the time these needs are met, it is estimated that 16% of children with special health needs report at least one unmet need (Maternal and Child Health Bureau, 2008; Newacheck and Kim, 2005).
Special health care needs increase with age; 8% of children under the age of 5 are considered to have special health care needs, 14.6% of children between the ages of 6 and 11 have special needs, and 15.8% of adolescents have special needs. In addition, special health care needs are more common in boys (15%) compared with girls (10.5%) (Maternal and Child Health Bureau, 2008).
Childhood disability may be developmental or acquired and may be a result of prenatal damage, perinatal factors, acquired neonatal factors, or early childhood factors. These may include genetic factors, prematurity, infections, traumatic or toxic exposure, or nutritional factors. In some cases, the etiology of many childhood disabilities remains unknown. Preventive screening for genetic disorders including developmental disabilities is critical for early detection and medical intervention. Newborn screening, immunization programs, and genetic counseling prevent disabilities. Neonatal screening for phenylketonuria (PKU), hypothyroidism, thalassemias, and other disorders has greatly reduced childhood disabilities.
An often overlooked source of disability is that related to mental disorders. According to the National Institute of Mental Health (2010), each year approximately 57.5 million Americans over the age of 18 (26.2%) have a diagnosable mental disorder. Major depressive disorder is the leading cause of disability in the United States for individuals ages 15 to 44. For individuals with one diagnosable mental illness, almost 45% meet criteria for a second or third mental illness. Multiple diagnoses, including individuals with a dual diagnosis, increase the severity of disability and functional impairment.
The Effects of Disabilities
The costs of chronic disability to the injured persons, family, employers, and society are significant. In 2008 the ACS estimated that of the non-institutionalized population ages 21 to 64 who had any type of disability, only 39.5% were employed. Employment rates varied by type of disability, with hearing disability having the highest rate of employment (56%) and self-care disability having the lowest rate of employment (18.7%) (Erickson, Lee, and von Schrader, 2010).
Employment rates also vary based on educational level. In general, for individuals with any type of disability, the higher the educational level, the higher the rate of employment. Of disabled individuals with less than a high school education, only 25.3% were employed. Those with a high school education had an employment rate of 37.6% whereas 57.6% of those with a bachelor’s degree or higher were employed (Erickson, Lee, and von Schrader, 2010).
Disability status also affects annual household income, as can be seen in a 2008 survey of the average annual household income among households with or without a disabled individual age 21 to 64. The annual household income for households with a disabled member was $39,600 whereas the income for households without a disabled member was $61,200. Of perhaps greater significance is the number of individuals living below the poverty line (25.3%) as opposed to non-disabled individuals living below the poverty line (11.2%) (Erickson, Lee, and von Schrader, 2010).
Nurses provide care for persons who are disabled, for their families, for the populations and subpopulations that they comprise, and for the communities in which they live. Remember that some clients prefer to be regarded as being physically or mentally challenged or compromised, whereas others may think such terms minimize the importance of the needs and problems of people who are disabled. The extent to which the disabled person may need extra support, care, and services from the family unit and the community is shown in Box 31-2. These relationships are best understood by looking at the stress placed on the individual.
Effects on the Individual
According to the USDHHS, disabilities are characteristics of the body, mind, or senses that affect a person’s ability to engage independently in some or all aspects of day-to-day life. Many different types of disabilities exist, and they affect people in various ways. People may be born with a disability, develop a disability from being sick or injured, or acquire a disability with the aging process. Most men, women, and children of all ages, races, and ethnicities will experience disability at some time during their lives.
As the population ages, the likelihood of developing a disability increases. For example, 22.6% of individuals 45 to 54 years old have a disability, 44.9% of 65- to 69-year-olds have a disability, and 73.6% of those 80 years and older have a disability. Disability is not a sickness, and most people with disabilities are healthy without a documented chronic illness. However, persons with disabilities may be at greater risk for developing illnesses as a result of their condition. For example, someone with decreased mobility can suffer from the problems of immobility such as obesity, skin breakdown, osteoporosis, pneumonia, malnutrition, or loneliness. Most persons with disabilities can and do work, play, learn, and enjoy healthy lives (USDHHS, 2010b).
Many disabled people try to discourage the image that they are helpless and pitiful. For example, Murderball is a documentary film about several quadriplegic rugby players who play competitive rugby in wheelchairs. Their motto is “Smashing stereotypes one hit at a time!” These individuals promote the idea of living and working independently (U.S. Quad Rugby Association, 2010).
Children: Infancy Through Adolescence
Children who live with a disability are affected in many ways. In an effort to decrease childhood obesity, greater emphasis has been placed on increasing children’s physical activity. In spite of this goal, children with any type of disability continue to be less physically active and at greater risk of obesity than their healthy peers. This is in part due to the relative lack of available opportunities for disabled children to participate in organized and spontaneous play. Moreover, non-disabled children and parents have also had negative attitudes about interacting or playing with disabled children (Obrusnikova, Block, and Dillon, 2010; Reinehr et al, 2010).
Children and adolescents with special health care needs are also at higher risk to experience psychological maladjustment compared with their healthy peers. The risk of psychological problems such as depression and anxiety were correlated with the degree of physical impairment, not with the level of disease activity. For some, the inability to participate in certain physical activities affects their feelings of belonging and self-worth (Ding et al, 2008; Wilson and Clayton, 2010).
A particular problem for children with cognitive disabilities is difficulty with accurately interpreting social cues. These children are less likely to understand a social interaction that differs from usual and predictable interactions. As a result of misinterpreting social cues, children with cognitive disabilities are at a disadvantage in developing age-appropriate friendships. This can contribute to increased social isolation for many disabled children (Leffert, Siperstein, and Widaman, 2010).
For other children, managing the effects of their disability may cause embarrassment and they may choose to isolate themselves from others. For example, students who have spina bifida or renal disease might need to leave classrooms or other school settings quickly to use the bathroom. Having to explain this need to their classmates could call unwanted attention to these children and their diseases. However, disabled children can overcome some of these obstacles if they have families who are able to provide the support necessary for the development of more positive self-images and a feeling of inclusiveness. The use of assistive technology such as computers can enhance learning and decrease obstacles related to inadequate education (Kliebenstein and Brome, 2002; Heywood, 2010; Murchland and Parkyn, 2010).
The unique issues and challenges experienced by adolescents with disabilities have not been studied as well as those that affect younger children and adults. This population is often overlooked by advocacy groups for the disabled and by most of the new initiatives developed for disabled persons. However, the years between 10 and 18 are difficult ones for most adolescents, and the needs of those who are disabled are similar to those of their healthy peers (i.e., education, peer relationships, recreation, and planning for the future). In addition to the expected challenges experienced by adolescents, those who are disabled must also deal with prejudice, discrimination, and social isolation because of their disability (Groce, 2004; Redmon, 2010).
Disabled adolescents are often viewed as asexual by their healthy peers. However, they are as sexually active as healthy adolescents. They view themselves as “normal” even though they realize that others perceive them differently. Moreover, disabled adolescents are just as likely as their non-disabled peers to engage in risky sexual activity. This places them at risk for unplanned pregnancy and sexually transmitted diseases. Therefore, they should receive the same amount of sexual education as their unaffected peers (Skar, 2003; Maart and Jelsma, 2010).